"Patients with celiac disease absolutely have to have a gluten free diet completely because even a small amount of gluten can cause that small bowel destruction," said Dr. Kimberly Chaput with St. Luke's Health Network.

Chaput says the FDA ruling has put the spotlight on the disease, but she says people who think they have it should get an official diagnosis.

Chaput says in some cases, patients have a less harmful gluten sensitivity instead of celiac disease.

Chaput says it can be detected with a blood test or biopsy.

For Esther Schuman, finding food that won't make her sick has been difficult and time consuming.

"You have to really do your own research on the Internet," said Schuman, who was diagnosed years ago.

She says she hopes her story helps other people struggling to avoid gluten.

She says she's looking for a Celiac disease support group or cooking club to share challenges like dining out.

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